April 2016 CSS/EGPA Story

Kyle’s Ongoing Adventure with Churg Strauss Syndrome

londonKyle is 29 and from London, England.  He offers a very different accounting of his journey to diagnosis and what he has experienced since diagnosis.

He hopes his detailed accounting and ongoing updates will help others and raise awareness of Churg-Strauss Syndrome.    Kyle has kept a very mindful accounting of symptoms, doctor visits and tests through his diagnostic phase and has continued to add to this ‘living’ document so he can look back and see patterns and has accurate details to relay to his doctors along the way.   Since this is a living document and changes we have given you the link here so you can can check back often and see how Kyle is doing.

Kyle first symptoms began in September of 2015 and fortunately he was diagnosed in January 2016.  He demonstrates here something very important that helps when diagnosing a rare illness — he documented everything.71jCc1hVRkL._SL1500_-1  By keeping these great notes patterns could emerge and he could share them with his medical consultants.  In the future, through his ongoing documentation he is able to keep track of medications and side effects and ongoing or new symptoms.  This will help him understand his CSS better.

Although Kyle is new to the CSS ‘club’ we can learn a lot from his documentation.  It is important to document you symptoms so you can remember what you were feeling when you see your doctor.Taking photos of rashes or outward signs can also help your doctor.  It is also important to get copies of all test results and keep a file of them in case you need to refer back to them.

Kyle’s Google ‘Living’ Document of his illness.

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Every Month the Churg Strauss Syndrome (CSS) / Eosinophilic Granulomatosis with Polyangiitis (EGPA) publish a personal story about living with this life changing chronic ailment.    This is done to bring awareness to our disease in an effort to let the world know we exist and we want to help others obtain earlier diagnoses.  It is a documented fact that earlier diagnosis leads to better outcomes in CSS/EGPA.

This project was started by a very brave CSS patient named Glenys in memory ofkevinselig a CSS warrior we lost all too soon.

Kevin Selig  was diagnosed in January 2014 with Churg Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.

 

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